Ziemssen Focke, Sylvanowicz Michelle, Amoaku Winfried M, Aslam Tariq, Eldem Bora, Finger Robert P, Gale Richard P, Kodjikian Laurent, Korobelnik Jean-François, Lin Xiaofeng, Loewenstein Anat, Mitchell Paul, Murphy Moira, Owens David R, Parker Nick, Pearce Ian, Rodríguez Francisco J, Stern Jude, Talks S James, Wong David T, Wong Tien Yin, Barratt Jane
University Eye Clinic, Department of Ophthalmology, University Hospital Leipzig, University of Leipzig, Leipzig, Germany.
Centre for Ophthalmology, Eberhard Karl University of Tübingen, Tübingen, Germany.
Ophthalmol Ther. 2025 Jan;14(1):229-246. doi: 10.1007/s40123-024-01060-4. Epub 2024 Dec 14.
In contrast with patients receiving therapy for retinal disease during clinical trials, those treated in routine clinical practice experience various challenges (including administrative, clinic, social, and patient-related factors) that can often result in high patient and clinic burden, and contribute to suboptimal visual outcomes. The objective of this study was to understand the challenges associated with clinical management of diabetic macular edema from the perspectives of patients, healthcare providers, and clinic staff, and identify opportunities to improve eye care for people with diabetes.
We conducted a survey of patients with diabetic macular edema, providers, and clinic staff in 78 clinics across 24 countries on six continents, representing a diverse range of individuals, healthcare systems, settings, and reimbursement models. Surveys comprised a series of single- and multiple-response questions completed anonymously. Data gathered included patient personal characteristics, challenges with appointment attendance, treatment experiences, and opportunities to improve support. Provider and clinic staff surveys asked similar questions about their perspectives; and clinic characteristics were also captured.
Overall, 5681 surveys were gathered: 3752 from patients with diabetic macular edema, 680 from providers, and 1249 from clinic staff. Too many appointments, too short treatment intervals, difficulties in traveling to the clinic or arranging adequate support to travel, out-of-pocket costs, office/parking fees, and long waiting times were noted by all as contributing to increase the burden on the patient and caregiver. Patients generally desired more in-depth discussions with their provider, which would help with information exchange and better expectation-setting.
The wealth of systematic data generated by this global survey highlights the breadth and scale of challenges associated with the clinical management of patients with diabetic macular edema. Addressing the opportunities for improvement raised by patients, providers, and clinic staff could increase patient adherence to treatment, reduce appointment burden, and improve clinic capacity.
与在临床试验中接受视网膜疾病治疗的患者不同，在常规临床实践中接受治疗的患者会面临各种挑战（包括管理、诊所、社会和患者相关因素），这些挑战通常会导致患者和诊所负担加重，并导致视觉效果欠佳。本研究的目的是从患者、医疗服务提供者和诊所工作人员的角度了解与糖尿病性黄斑水肿临床管理相关的挑战，并确定改善糖尿病患者眼部护理的机会。
我们对来自六大洲24个国家的78家诊所的糖尿病性黄斑水肿患者、医疗服务提供者和诊所工作人员进行了调查，这些诊所代表了不同类型的个人、医疗系统、环境和报销模式。调查包括一系列匿名完成的单项和多项选择题。收集的数据包括患者个人特征、预约就诊的挑战、治疗经历以及改善支持的机会。医疗服务提供者和诊所工作人员的调查问卷询问了他们对类似问题的看法；同时还收集了诊所的特征信息。
总体而言，共收集到5681份调查问卷：3752份来自糖尿病性黄斑水肿患者，680份来自医疗服务提供者，1249份来自诊所工作人员。所有人都指出，预约过多、治疗间隔过短、前往诊所就诊困难或难以安排足够的出行支持、自付费用、办公/停车费用以及长时间等待等因素导致患者和护理人员负担加重。患者普遍希望与医疗服务提供者进行更深入的讨论，这将有助于信息交流并更好地设定预期。
这项全球调查产生的大量系统数据凸显了与糖尿病性黄斑水肿患者临床管理相关挑战的广度和规模。解决患者、医疗服务提供者和诊所工作人员提出的改进机会可以提高患者对治疗的依从性，减轻预约负担，并提高诊所的服务能力。
